TIF is happy to announce that there was positive reaction by the local stakeholders in Nepal, who expressed willingness to proceed with concrete actions to improve the care of thalassaemia for children and adult thalassaemia patients. These actions include:

The provision of free space in the state hospital for the treatment of children and adults

The provision of free blood to patients, to balance the current out-of-pocket expenses

Placing chelation drugs on the Nepalese list of Essential Drugs, which means that these drugs will be offered free of charge for patients. Chelation agents for haemoglobinopathies are already in the WHO Model List of Essential Medicines. WHO defines essential drugs as those that satisfy the priority health care needs of the population. They are selected with due regard to public health relevance, evidence on efficacy and safety, and comparative cost-effectiveness.

TIF is pleased with the public sensitization and formal recognition of the difficulties and challenges that Nepal has, for decades now, been facing with regard to the above-mentioned aspects of thalassaemia treatment, and the need for improvement in the treatment and care.

There were also longer term outcomes that derived from the visit, which TIF is particularly happy and hopeful about:

the agreement to conduct epidemiological studies in Nepal by the National Public Health Laboratory

the creation of a national thalassaemia registry. Registries are usually disease-specific and serve to store patients’ personal information and their medical history. They thus allow the government, officials and researchers to estimate the disease-burden associated with thalassaemia and answer questions about the number of patients with thalassaemia. The development of a thalassaemia-specific national registry will be a very important development for Nepal and will help structure a quality care system for patients with thalassaemia, provide accurate advice to patients and improve their life expectancy accurate advice to patients, and to improve care pathways, which can lead to improved care and life expectancy, even in the absence of a cure.

TIF considers this visit a success and a step forward in its mission to ensure quality of care, life and equity of access for all patients in all affected countries. We remain vigilant for the implementation of these measures the soonest possible.

Working together to improve thalassaemia care worldwide! We will not stop until all patients in all affected countries receive adequate and safe treatment that will allow them to enjoy a prolonged, quality life!